Tag: #Anxiety

When I started this Blog, it was really intended to be an outlet to express my life and with it was like living with a terminal illness, lumps and all. It is still that, but it has turned into so much more. Little did I know that a year ago on Bell Let’s Talk Day, a post I wrote the previous year talking about what it was like coming off of antidepressants would resonate so deeply. Deeply enough that it was picked up by WordPress’ Discovery team (a very awesome experience). I don’t know if this year’s post will be as profound or powerful, but I hope it touches someone out there and let’s them know they aren’t alone, and it’s ok to ask for help.

This year has been hands down the hardest year for me mental health wise. I have felt things that don’t seem like me. I have always been cheerful and tenacious, but since changing cancer medications, I have felt anything but. I wish I could just switch meds, but they ARE the thing that keeps me NED and cancer free(ish), so I can’t just stop, or change, I have to deal.

But it has been scary!

This year I have gone to some very dark places, had thoughts I never thought I’d have. I have to remind myself, that I am not these thoughts, and that tomorrow is a new day. Initially, these thoughts would casually pass through my consciousness very briefly, to float away. Then they would happen as I looked at my life saving medication and wondered why I take them? I mean what’s the point? I’m so tired of all this. Gulp. Swallow, down the meds go. The thoughts soon float away. I then found myself on occasions, especially when I was feeling particularly down or feeling sorry for myself questioning whether or not everyone would be better off without me? On very rare occasions I actually uttered these horrible thoughts, “I wish I were dead.” There it is. Dark. I am not my thoughts!

It took me a few times experiencing this downward spiral to realize that something was really wrong. I was in a crisis that I hid from everyone, even myself. Upon this revelation, I immediately called my psychiatrist. Even with counseling and antidepressants, the depression and darkness seeped through. It wasn’t until I read another blog responding to Chris Cornell’s suicide that I really even realized this wasn’t me and that my brain as the author put it, was sick. It took an increased dose of my antidepressants and more frequent counseling visits to vastly diminish the dark. I still feel down, but now I try to remember that tomorrow is a fresh start, I allow myself to feel whatever it is I need to feel, and then try to move on. I never give it a postal code. I won’t live there. I have too much to live for. Too much work to do. I love life too much, and I certainly didn’t go through all this to just throw-in the towel or bury my head in the sand.

For those who live in Canada, we have a wonderful initiative, sponsored by Bell Canada. It happens every year around this time and it raises both funds and awareness for mental health in Canada. Mental illness effects 1 in 3 Canadians, and yet it is still largely stigmatized. Bell Let’s Talk Day removes the stigma by allowing everyday Canadians to reach out and stand up, and is working to breakdown barriers faced by those who suffer from a mental illness. You can help raise awareness and funds by simply sharing #BellLet’sTalk. By doing so, Bell will donate 5 cents every time it is Tweeted, texted, mentioned online, or when you use the bell network, so call, Tweet, text your hearts out for mental health.

Be Well XO

If you or anyone you know is in crisis, please call 911 or

Distress Lines

Operated by various agencies. When in need of someone to talk to. Open 24 hours a day (unless otherwise indicated).

Today is May the 4th and for us Star Wars Fans out there it’s Star Wars Day and boy did I did feel at one with the Force. For a short time today I was truly happy because I was finally able to see my Oncologist and not one of her fellows (even though they are all lovely and very competent) because it’s just not the same. For months now, I have been struggling with being just good and not NED (No Evidence of Disease), it’s been quite an ordeal. This is in part because I have had access to the scan results and the fellows (bless them) have been saying “it looks good, no change,” the reports of course say that the nodules in slide x remain unchanged, so of course I see remain and think “well there’s cancer there!”

It was a tough pill to swallow (literally pills) going from being a super responder on Xalcori (yes its a thing) to just being good. For an over-achiever, this is not ok, especially when Lorlatinib is supposed to be a better drug. Well today I found I wasn’t just good, I’m a super responder and I’m NED!!! Hooray!!! So all that worry and mental gymnastics for nothing. Now that I’m relieved for myself, I can channel my energy into outrage for my friends in the US.

Maybe you haven’t heard or don’t know that the Republicans and the House of Representatives voted to support a heinous bill to replace the Affordable Care Act (AKA Obamacare). They voted despite not knowing if it would save lives or harm people. If you are looking for impartial, you won’t find it here! Many and by many I mean millions of people will have to pay tens of thousands of dollars more to even get insurance or care based on their pool.If I lived there I would be in the two to tiers and would have to pay at least 150K a year and that doesn’t accept for the expensive pill I need to live. Even if I was at the top of my pay grade this is way more than I could afford, so without it I would die. Thats what my friends are facing. It sickens me! It also makes me so incredibly thankful that I was born in and live in Canada. Our system isn’t perfect, but you can bet your ass that if you’re in trouble you will be guaranteed care.

I wanted so much for this post to be happy and for the most part it is. I wanted to just update everyone and summarize my weekend at the DC Hope Summit, but the more I think about is, the sicker I feel.

Look at all those beautiful survivors!! Also that’s Katie hope dealer extraordinaire 🙂

Last weekend I was so incredibly priviledged to be able to attend LUNGevity’s Hope Summit in DC through a donor scholarship (and the very hard work of resident hope dealer Katie Brown and everyone at LUNGevity). It was an incredible experience! It’s not often that one is able to meet so many others like me. There were people from all stripes, young, old, survivor, supporter, newly diagnosed, those who have been around the block and everything in between. Before this, I couldn’t have even imagined having 340 other survivors and caregivers in one place. It was truly beautiful and tragic all a the same time. Beautiful because there were so many of us, tragic because there was so many of us. Its complicated.

I almost always need a few days to decompress and process my experiences because they really are massively emotional experiences, and I say that in the most positive way. There were so many ALKies like me, and ROS1ders, those with EGFR, Cmet and those without a driver mutation, regardless of who you were, there was someone there that knew and understood your experience.

ALKies

All the YA’s except me oops 😦

Young Adults W/ LC

It was just wonderful to see everyone talking and sharing, crying and laughing, taking hope from hearing someone else’s story and sharing their own, maybe empowering someone else. Many new advocates were born over the weekend and some old ones refuelled. Now, more than ever, they will be needed.

I have always marvelled at the close knittedness of the lung cancer community (so many of us knew each other online before ever meeting face to face) and how much sharing happens, how much progress is being made with so little. So little attention. So little funding, and yet research has happened, awareness is happening, action is being taken and people are living better and starting to live longer. But there is still a long road ahead. But we are just starting and bills like the AHCA is a massive setback to us and to all others who are vulnerable and live on the knife’s edge. So my thoughts are with all of you who hoped for the best, and are hearing the worst, resist my friends. Resist with every breath.

Hey folks we made it to week 8 in the meditation series and here we are at the end! It has been really wonderful to put this out there and to practice and re-fresh myself again, I truly hope it has helped you in some way.

Hopefully as a result of your dedicated learning and practice, you may have noticed some changes in you since you began. If you haven’t, now might be a good time to ask yourself…have you noticed any changes since you began 8 weeks ago?

The changes may be different than you expected and they might not be monumental. They may include subtle shifts, like discovering that you don’t react as readily to stressful situations, maybe now you take a deep breath or two before you act or don’t act. Or maybe you’ve discovered that you are sometimes able to find space in the day to take a few minutes to yourself, or that you are a little more resilient in difficult situations, or that you’re just a little kinder to yourself. No matter what they were, pat yourself on the back, you made it.

Now the challenge will be to continue on practicing. It doesn’t have to be intense like these 8 weeks have been, it’s up to you to find your own way. There will always be a million things pulling you in all directions and getting in the way, its up to you to remind yourself to be mindful and do things intentionally.

One of the greatest lessons I have learned throughout my 7+ years of living with cancer is, there is no control. It is an illusion. I can control the weather as easily as I can control the things happening in my own body. That is to say, I can’t!

What I can control, and what you can control is how we choose to react (or not react). How you choose to live with meaning and intention. We can let our lives go by with notions of shoulds and wounds, but by doing that we miss life.

So live.

AM

“When possible do just one thing at a time. Pay full attention to what you are doing. When the mind wanders, gently bring it back. Repeat step 3 several billion times. Investigate your distractions”

When I get writer’s block, I get writer’s block, and that’s exactly what happened…that then add a dash of perfectionism and you have a recipe for disaster!

I don’t know why I can’t quite get a coherent piece of writing done around this week’s topic, which is Loving Kindness and how best to care for yourself. I have written and re-written this post over and over, but it never really seems “right”.

I know I am my own worst critic and hold myself to a ridiculous standard that I wouldn’t normally hold for others, and I’m working on it. For me, it’s easier to recognize someone else’s pain and suffering than my own, and often when I do, I feel terrible and beat myself up because, “There’s someone out there who’s worse off than I am, how dare I feel sorry for myself”. I have gotten better with that, but I am still hard on myself. This week’s practice is about evaluating and being mindful on how to be kind (not judging) towards yourself and how to best care for yourself in times of distress.

Some may say that this is selfish, but I’d ask you to read Five Myths to Self-Compassion, it is quite enlightening, I found it very informative and beneficial in dispelling my own myths. Another tool that helps is practicing the Loving Kindness Meditation.

When trying to evaluate areas of our lives that may help us to care for ourselves, it may be beneficial to ask one of the following questions. (You can do this with an existing page in an agenda, or start fresh by making a list, or by just asking is this an N or a D.)

Of the things that I do, what nourishes me or gives me pleasure, what increases my sense of actually being alive and present rather than just getting by? (Add an N next to those things on the list)

Of the things I do, what drains me, what decreases my sense of being alive and present, what makes me feel like I’m just scraping by or feeling worse or drained? (Add a D next to those things on the list)

Accepting that there are some aspects of life that just can’t change, I am consciously choosing to increase the time and effort I give to nourishing (N) activities and decrease the time and effort I give to depleting (D) activities.

Action Plan

Think about a time when you faced difficulty. What are some of the things that got you through the difficulties? What are things that would sooth you, activities that might nourish you, people who you might contact for support, small things you could do to help you get through?

Now write down suggestions to yourself for an action plan that you can use as a framework for coping the next time you are facing a tough time or if you are feeling depressed.

For example, a plan may look like…I know when I was depressed last month, I was able to call Mary for support, she talked with me and on another day she visited me too. I felt better after having a nice long bath, where I lay in the water and meditated for a few minutes. I also felt better after I went for a walk, I was really able to gather my thoughts after some fresh air. Making an appointment and speaking to Dr. Jones was really helpful too.

It can be helpful to remind yourself that what you need at times of difficulty is no different from what you learned and practiced in the past few weeks or in other times of difficulty.

I am still sweeping up pieces of myself and putting them back together.

I have been broken before, so I know I’ll be ok.

Stronger.

Kintsugi is the Japanese art of fixing broken pottery, and its philosophy is rather beautiful. It recognises the beauty and value in broken things (more specifically pottery) and speaks to the breakage and repair of objects becoming the history of something, rather than the disuse of it. Potters often repair objects with resins mixed with gold or silver, making no attempts to hide cracks, but to highlight them and make pieces more beautiful and interesting. Here we tend to throw them out. I prefer the Japanese way.

A few years ago at a conference workshop on journalling we were asked to quickly write a response to the idea of Kintsugi. I wrote something and really never shared it, but in light of recent challenges and losses, I am using it to find strength again. I share it with you, its my story in a nutshell.

The fallout is far worse than the sickness. Once treatment is finished, the shell-shocked ruin of a person emerges from the fog. Every emotion and sense of fear comes pouring forth from me.

The problem was I couldn’t share these thoughts and emotions because if people really knew how wrecked I was, how terrified I was, they too may begin to crumble.

I wanted desperately to put back the pieces of my ruined life, to mend them and be the person I had been. The trouble was that person was gone.

I was paralyzed by fear. Terrified that once I managed to fix my life and myself, it would all crumble to dust and there I’d be again, cancerous.

Somehow I tried my old life back on for size, but it didn’t fit. Like a shoe that was two sizes too small, it was uncomfortable and gave me blisters, but I put my brave face on and carried on. I had “successfully” taped my bowl back together.

Even though it leaked and looked like something Homer Simpson might make, it was together. Then it fell and shattered again.

More pieces strewn about, more pieces to pick up. How would I survive? Recurrence is a bitch.

Faced with few tangible options I decided to forgo trying to fix myself again. Instead I chose to live and love and be happy. I knew the bowl could never look the same, it had been too “damaged” and broken.

I chose to accept it, scars and all. I gave up the mask of bravery and allowed myself to be raw and vulnerable. To share that vulnerability with those around me. In doing so, I slowly turned that ugly shell of a person into something stronger and far more beautiful.

Each crack like a work of art, a work of love, a work of life.

MBSR like Kintsugi is about accepting things as they are.

Week Six of MBSR focuses on two ideas that are designed to help us strengthen our minds to be able to do this: Thoughts are not Facts andMindful Communication

So often how we think and communicate can be a point of stress. By becoming aware over and over again how (in meditation) our thoughts can effect us, we can recognize them, let them go and return our focus to our breath. With time and practice we can gain some distance and perspective on our thoughts allowing us to see that there may be other ways to look at or think about situations, breaking us free from old patterns. Thoughts are only mental events, they are not facts. We certainly are nt our thoughts.

Communication patterns can also be problematic or a source of tension for many of us. One of the reasons communication can break down is that many of us focus on or project the hope that someone else will give us what we want – attention, validation, understanding or approval. What this does, is put pressure on the other person, and sometimes backs them into a corner. Often when we feel pressured, we shut down rather than open up. When that happens during a conversation, often communication breaks down because a person can feel threatened, resentful, and not heard. In MBSR we are learning to focus in on ourself and our behaviour rather than those of others. We tune into our thoughts, emotions and physical sensations so that we can read them. By being aware of these things, we gain a better sense of perspective and balance and can then focus on communicating our need rather than projecting them.

These ideas can be hard to learn and sometimes even more challenging to practice, because the ask us to really examine ourselves and ask us to be accountable to ourselves. However, once you do learn these lessons, you will find your perspective changing. You may even be able to let go.

It’s one of those days where I wish I could unzip my skin and I could become someone else. Just for today. I can’t so I just want to hide. Crawl under my covers, or be like a cat and shelter under the bed.

I want to scream, but if I open my mouth to talk, I feel so fragile right now, I’m afraid I’ll break into pieces, and I just don’t have the strength today to put myself back together. So I’m writing.

I’m trying really hard to drag myself out of the swamp of feelings I have. Sorrow for children who have lost their mothers, husbands who have lost their wives, families who will have an empty seat at their tables. I think about how one day that will be my people, who will feel this for me. It is gutting.

Today the reflection in the mirror is hard to look at. It shows reality. A reality where 4 pills a day keep me alive. A reality where I wonder why I got so lucky, when others stronger, younger, better than me aren’t. A reality where the knife’s edge I dance on is clear and present. A reality where the clock is ticking and time is running out. It’s a hard reality.

I know the only way to get through today is one foot in front of the other.

Tomorrow I will try to let go.

This is a really crappy way of segueing into the MBSR Week 5, and I swear I’m not making up the theme: Allowing and Letting Be. (Irony?!)

I suppose this is why MBSR can be so helpful. It teaches us and sometimes deliberately forces us to examine and really be present in aspects of our lives that are hard. It also teaches us that it’s okay if we experience hardships, anxiety, loss, or stress. These things are part of life. What it is designed to do is help and encourage us to look at these things with non-judgment and kindness towards ourselves and others.

This is the lesson I find hardest. Guilt is a nasty beast and today I have a bad case of survivor’s guilt. I’m having a hard time with not judging and treating myself with kindness. It’s easier to wallow if I beat myself up or tell myself I shouldn’t allow myself to feel badly. It’s easier to mourn them than it is to mourn me.

No one likes things that suck, but sadly they are part of our lives. The suckiness of something can range in variety and gravity, but sucks none-the-less.

I know there have been many times in my life where things seemed overwhelming or the crushing sensation of stress and anxiety made it seem like I could never climb out of the hole. In the past. I would have likely handled those feelings by drowning them in retail therapy, alcohol and escapism. I’d like to think I’m a bit more self-aware now, but stress has a way of sneaking up on you.

So what so we do when we encounter a crap fest or, as it’s also known stress.

Typically we try to avoid it in one of four ways.

Spacing out – we go somewhere else in our heads or we switch off.

Hold on to it – we don’t allow ourselves to let go of the sucky experience or we wish that we weren’t having a crappy experience at all.

Wanting it to go away – we want to get rid of the experience or we avoid future events we don’t want to deal with.

The reality is, we can’t avoid all the bad things. Eventually, we need to learn how to deal with them in a productive way or else they compound and cause us undue harm. Mindfulness can help us become more aware of our experiences both positive and negative so we can be less reactive and less stressed out.

The father of stress, Hans Selye defined stress as – The body’s nonspecific response to any demand whether caused by or resulting in peasant or unpleasant stimuli.

In nature, the stress response is designed to protect animals (humans included) from danger. It’s called the fight, flight or freeze response. Great for bunnies being chased by foxes, not so good for our hectic lives. The problem is, when we are constantly “under stress” and I don’t mean our lives are being threatened by a bear or an axe-wielding maniac, but the ongoing everyday work, life, kids, health, …whatever cycle. Then these stresses compound on us and our health can suffer.

That’s where mindfulness can help us.

This week, I’ll introduce the 1 Minute Breathing Space or (S.T.O.P).

This handy little acronym can help us when we are starting to spin out of control or really feeling the heat.

S = Stop and pause what you are thinking and doing.

T = Take a breath. Be mindful and take a slow deep breath.

O = Observe or notice what’s actually happening with you. Are you having thoughts or judgments, emotions? Is there tension anywhere? Is your heart beating fast? Are you breathing quickly?

P = Proceed with awareness and kindness towards yourself and others.

Easy? No! Believe me when I say I use this ALL the time!!

This week marks our halfway point and I am curious to know how people are doing. How did the Adverse Events Activity go? What challenges are you finding? What successes have you discovered? What’s getting in the way of practice? Anything else you are noticing?

I’d love to hear how you are finding this!

Before I post this weeks homework, I have a request. – Lung Cancer Canada is looking for B-Raf oncogene positive lung cancer patients who have taken either Tafinlar® (dabrafenib) or Mekinist® (trametinib), or a combination of both to contact them. If possible, I ask you my lovely readers to please share this message through your social media channels. This particular mutation is incredibly rare and we can really use your help reaching patients.

My sincerest thanks.

AM

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom -Viktor E. Frankl

Practice at least six times this week, alternating Mindful Yoga 2 (or mindful walking) with the Sitting Meditation. Try not to expect anything from doing these. In fact, give up all expectations about it. Just let your experience be your experience.

Everyday: Practice using the 3-Minute Breathing Space, three times or at least once daily at pre-determined time. (I love this one, and use it all the time!) In addition complete the Unpleasant Events Journal.